Microsoft word - nephie_flyer_ englisch_patienteninformation.doc
Information for Patients Priority Objectives:
Via European parents and thus via the Soci-
and Interested People
ety for Paediatric Nephrologists (ESPN) we
have direct contacts to pediatric nephrolo-
healing of the very rare, presumably immu-
gists in the Netherlands, France, Belgium,
nological idiopathic nephrotic syndrome.
Evaluation of observational research in or-
der to find more considerate therapies giving
We attend conferences and congresses and
a chance to children’s self-healing compe-
thus stay informed about relevant and newly
published developments in the treatment of
the nephrotic syndrome. We want to support
Goals of Empowerment:
specific research for a treatment of the
nephrotic syndrome with less side effects.
- exchange of expert knowledge, patients’
Via a public internet forum we are in indirect
meetings, organization of scientific sym-
contact with about 300 concerned families
- communication and public work, informa-
On 16 April 2010 we have been accepted as
- encouragement of interdisciplinary col-
Nephie e.V.
- internet: general information, forum and
them and be their „voice“. We want to inform
about this small sub-group of kidney dis-
eases, for which transplants are no solution.
Member of „Allianz Chronischer Seltener
www.achse-online.de
(Leipzig, Berlin, München, Lüneburg, Ham-
swede, Rostock, Stuttgart i.a.) as well as in
Nephrotic Syndrome: Treatment and Risks: Situation
The nephrotic syndrom is characterized by a
Some children relapse only once or twice a
2 – 5 of 100,000 children develop an idio-
high loss of protein via urine. Urine purifies
the body from many organic waste products
quickly by prednisone. Other little patients
but contains normally only a smallest trace
have three or more relapses a year and de-
of protein. By massive proteinuria in connec-
velop severe prednisone dependence. This
tion with nephrotic syndrome albumin level
frequent relapsing may lead to kidney fail-
in the blood decreases and oedema develop
ure. These are the difficult cases of the
good chance for full recovery. Still, with
Minimal Change Nephrotic Syndrome, which
some patients the disease persists to adult-
are treated currently with long term immuno-
By massive proteinuria and hereby develop-
ing oedema the nephrotic syndrome is typi-
Individual therapy, close to trigger events
cally characterized by a quick increase in
Children not responding to steroids (less
as well as complementary medical treat-
weight, sometimes several kilograms within
than 5 % of the cases) develop scaring of
ment may help to avoid problems like
the kidneys and thus suffer from limited kid-
ney function or even kidney failure. These
Steroid Sensible Minimal Change Nephrotic
quickly; but it is very often the case that the
Syndrome, the Steroid Resistant Nephrotic
In today’s hospital situation with its enor-
mous cost pressure and lack of personnel
sclerosis may destroy kidney function and
often little room is left for basic research
Asma ocupacional Occupational asthma P. Cebollero1, E. Echegoyen2, M.A. Santolaria1 ABSTRACT Asma ocupacional es aquella entidad que se desa-Occupational asthma is an entity caused byrrolla por causas o condiciones derivadas de un deter-conditions deriving from a certain work milieu and notminado medio laboral y no por estímulos que sefrom stimuli found outside the workplace. Nowa
The Oxford Stone Group Department of Urology Oxford University Hospitals NHS Trust Rigid and flexible ureteroscopy and stone fragmentation What does the procedure involve? Removal/fragmentation of stone(s) in the ureter or kidney using a rigid or flexible telescope. It may be combined with placement of a soft plastic tube or stent between the kidney and the bladder. This proce